Monday Chat: Why does it matter if the illness is INVISIBLE?

September 8, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

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Does it matter if the illness is invisible or not? Why?

We chatted about invisible illness on Monday, September 9 at 11 AM PST/2 PM EST (USA). Christine of ButYouDontLookSick.com joined us!

Below you will find links to the specific questions and answers. You can still add your comment if you like or respond to the comments of others.

friends1 Monday Chat: Why does it matter if the illness is INVISIBLE?Welcome, everyone. Thank you for joining us. This is Lisa behind the scenes along with Christine Miserandino of the Spoon Theory. I will be posting a question and then you will comment and reply to others about it. We will be talking about the idea of “invisible illness” today. —>Read more here

Getting to know you…
If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness, or… your favorite color, your favorite shoes, whatever! We want this to be fun!  —>Read more here

While a chronic illness is more about the length of time an illness exists, “invisible illness” is more about how you relate to other people and they relate to you since you look healthy. How does using the term “invisible illness” validate how you feel about your illness? Christine, you have done this from the beginning with your outreach. Can you comment on this? —> Read more here

Have you ever explained to loved ones how you have an invisible illness or hidden disabilities? Did it help them understand the impact of your struggles at all–or not? I know Christine’s Spoon Theory has helped many people explain.  —> Read more here

When you identify with having an invisible illness, does it help you feel more validated–or does it create more bitterness–an “us” versus “them” mentality? How can we prevent our disappointment in people making us resentful?  —>Read more here

When you share invisible illness memes or images or sayings online among your healthy friends, do you think it makes a little bit of a difference? Do they gradually come to understand there is more to how you are feeling than just how you appear? —>Read more here

As part of the invisible illness community, do you feel having these “friendships” helps how well you cope with your disease? Does having a group of people who “look fine but feel awful” make you feel more understood or is it too generalized and you find more comfort from those with the same illness? —>Read more here

Thank you everyone for joining us today, especially our guest, Christine! You can return here anytime and comment some more or read others comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week.  —>Read more here

Christine has been having some computer problems but she will be here for the next hour. Do you have a question for her, the special woman who came up with The Spoon Theory? Feel free to post here below and she will answer you personally! (thanks, Christine!) —> Read more here

 

To see ALL CHATS of the entire week, you can use hashtag #invisibleillnesschat or just click here.

Thank you for making this chat a great opportunity to learn more about invisible illness, how we identify with it and a chance for us to encourage each other. Take a moment to share this page with someone else. You can pin it, share it on Facebook or your support group. You never know who is suffering silently and feeling invisible. Thanks,

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  • firedrake

    I know my profile pic doesn’t look sick , but I suffer some something the doctors now call “Reactive Arthritis”, and which used to be called “Reiter’s Syndrome/Disease”. People don’t know how to react if they can’t -see- what’s wring with you. When mine flares up, I can barely hold on to the coffee cup, much less a pair of heavy dumbbells.

    Luckily, it doesn’t flare that often. The last serious flare was ten years ago. Starting after a major round of antibiotics earlier this year for infectious bronchitis, my immune system starting overreacting, first with IBS, then urethritis, and finally, starting in June, the wrists, then hands, really started to hurt. As healthy as I look, people just don’t know how to react.

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